Diversity Series: Solutions for the STEM diversity problem at the University level (reblog)

Lack of hispanics, blacks and other minorities in the sciences is a well-documented problem. What is at the root of this problem? At what level of training or education should the solutions be targeted at? These are some of the questions individuals working in this area grapple with constantly. Here is an interesting piece from the Huffington Post that discusses the problem and possible solutions at the level of higher education.

As a side note, we’re excited to host Dr. Maggie Werner-Washburne, one of the contributors to this piece, in February 2015 for a seminar for Hutch United, a group committed to fostering diversity in science at Fred Hutch.

http://www.huffingtonpost.com/george-sanchez/crisis-opportunity_b_6181290.html

 

Hutch United Logo 4

Personalized medicine changing what it means to ‘do the best we can’ for patients

The Institute for Systems Biology in Seattle held a conference this week that focused on systems biology and cancer. Experts from all over the country were brought together  to share their work on how biological and clinical data derived from a single patient or big data derived from thousands of patients can be analyzed, integrated and, ultimately, used to treat that patient or others like him or her. The technological developments of the past decade and half allow us to generate large amounts of data from any given individual. These data include the individual’s genetic sequence, the levels of different genes being expressed in their cells, and other clinically relevant information. A big challenge for physicians is how to bring the benefits from these technological advances into the clinic to benefit patients.

During the conference, Dr. Tony Blau, a physician scientist from the University of Washington, described how having access to large amounts of data has changed what  ‘doing the best we can’ for a patient means since he first started treating cancer. He urged that it is time to bridge the enormous the gap between the rate of growth of current technological advancements and the rate at which these advancements are making it to the clinic. He discussed some of his own efforts toward this goal in a TEDx talk earlier this year. Check it out for yourself!

 

Adapted from Dr. Tony Blau's TEDx Tacoma talk and presentation at the ISB Systems Biology and Cancer Symposium, April 2014
Adapted from Dr. Tony Blau’s TEDx Tacoma talk and presentation at the ISB Systems Biology and Cancer Symposium, April 2014

Sharing Our Stories – Diversity Series

This is the second post in the Diversity in Science Series where I reflect on some of my own early experiences as a person of color and the first in my family to enter a PhD program.

The first time I noticed the lack of diversity in the sciences was as a young graduate student as I listened to a seminar and noticed that I was one of only a few people of color in a full auditorium. I distinctly remember feeling both intimidated and conspicuous. I’m sure I wasn’t the only new graduate student who felt intimidated. It was common feeling among everyone in our class, regardless of color. We had even learned there was a name for what we were feeling, ‘impostor syndrome.’ The thing for me was that the feeling of being an impostor wasn’t just because I’m brown—Indians aren’t underrepresented in the sciences.

Feeling like an impostor came more from my personal background. Everyone seemed so familiar with the research scene. I didn’t even know what a ‘PI’ was when I first arrived since I had never done research in a lab. (FYI, PI stands for Principal Investigator—in other words the boss of the lab.) My classmates seemed to be so comfortable socializing with other students and faculty. The only PhD’s I knew before grad school were my professors from undergrad. And, it seemed like everyone else’s parents were professors or doctors or other types of academics. I came from a blue collar family. My dad was a farmer in India and worked as landscaper in the US before becoming a real estate agent. My mom was a house wife in India and then worked at a farmer’s market and a macaroni factory in the US.

I felt out of place—and I didn’t want anyone else to know. So, I faked it.

I didn’t ask questions but instead paid attention and stayed quiet until I learned what I needed to without letting anyone in on my secret, for a while anyway. It took me about a year to start to make friends—who eventually became really good friends and got to know the real me, and my family. As time went on, I realized that I wasn’t alone in feeling this way. A lot of folks had come from different backgrounds, and I don’t just mean color. But nobody ever talked about it so we went around thinking we were alone in feeling out of place.

We were all faking it!

Why was there the need for secrecy? The thing about being different in any environment is that it can make you feel very conspicuous. No one has to say a single word to you for you to feel this way, you just do. I didn’t want to seem to others like the outsider I felt I was, so I kept my little secret. And so did everybody else.

Would things have been different for me in those early years had I met someone who came from a similar background? Definitely!

I am so proud (and always have been) of my family’s ‘blue collar’ background and how hard my parents worked in a country that was foreign to them so my siblings and I would have the best opportunities available to us. I’m ashamed I didn’t talk about it openly, or even hid it in an effort to fit in. Maybe if we share our stories more openly, we can help reduce the pressure of fitting in and being different for aspiring young scientists from even the most humble backgrounds.

It’s been many years since that day in the auditorium, and I still find myself thinking about diversity in science. The difference is that now I openly talk about my ‘different’ background, especially to the younger scientists. It’s time to celebrate the diverse backgrounds we all come from and use this diversity to launch us forward, and not hold us back. As a few friends and I endeavor to find solutions to the diversity problem at our own institution, we’re starting by sharing our own stories. Everyone has one. What’s yours?

Why is diversity in the workplace so important?

Diversity in the sciences is a topic that is close to my heart and something I keep coming back to over and over. It’s not something we strive for just in the sciences but probably all work places. I’ve always taken it as a given that diversity is a good thing without feeling the need to justify it. But, why is diversity so important in the workplace?

What diversity means to me

For me, diversity refers to cultivation and celebration of ideas from and individuals from different ethnic, national, social, economic, political, physical, mental and sexual (orientation and identification) backgrounds and ways of thinking. Yeah, it’s a cumbersome definition but it’s inclusive, just like the word it defines. And notice, I didn’t write ‘tolerance.’ For me, true diversity means respecting and celebrating differences, not just tolerating them.

Getting back to why diversity is important

An obvious reason is that cultivating a diverse work force allows ‘equal’ opportunity for folks from different backgrounds, some of which come with challenges that can be roadblocks to success. But I think the strongest argument for diversity is that we ALL benefit from working in an environment with people from diverse backgrounds, ideas and experiences. Working with folks with different experiences, different sets of assumptions and approaches to problems not only has the potential to lead to more creative solutions but also forces us to challenge our own assumptions and ideas.

Lack of diversity in the sciences is a problem

Despite the potential benefits, the sciences still struggle to be sufficiently diverse. We have a really nice representation of international scientists (which is great!). However, there’s a glaring and well-documented under-representation of African-Americans, Native Americans, Mexican-Americans, mainland Puerto Ricans and Pacific Islanders across academic and research institutions nationally. The problem gets worse the higher you go up the ladder, from undergrads, grad students, postdocs, faculty, and all the way up to higher administration. The reasons behind this are complex-involving circumstances that have basis in history, economics, social and racial conditions and politics-and we won’t explore them here.

What we can explore here are some possible solutions. Through a series of posts I’ll conveniently call ‘The Diversity Series’, I’ll explore different solutions some of us are implementing locally to foster diversity. The next post in the series will be ‘Sharing Our Stories.’

 

FDA Halts 23andme ‘Personal Genome Service’ Sales

The Food and Drug Administration (FDA) sent notice to 23andme co-founder and CEO, Ann Wojcicki, to stop selling the company’s direct-to-consumer genetic testing kits because the company was acting “without marketing clearance or approval in violation of the Federal Food, Drug and Cosmetic Act” (See full letter from the FDA). As the company seeks to provide medically relevant information to consumers, it is being required to seek FDA approval for the test which was first released in 2007.

The letter from the FDA sites that the federal organization has been working with 23andme to resolve many issues related to marketing and clinical validation of PGS (Personalized Genome Service) so several years without receiving the requested information and data, while 23andme has continued to expand marketing and the uses of their product.

I’ve previously written my opinion about personalized genomic testing like  what’s offered by 23andme, cautioning my friends to see it as entertainment only. Personally, I believe this new action by the FDA is a win for the consumer. Any test being marketed directly to the consumer (without a physician ordering the test) that claims to provide information that can be used to inform medical/lifestyle changes should be regulated. One would assume that most folks would consult a physician before making lifestyle changes based on genetic risk information from tests such as that offered by 23andme. However, I fear that operating under that assumption is probably not very wise. With expanded clientele through television advertisement, the chances of inappropriate use and interpretations of genetic tests outside the realm of physician and genetic counselor consultation are likely to increase.

Here are some other reports on FDA’s action on 23andme:

http://techcrunch.com/2013/11/25/23andme-fda-block/

http://abcnews.go.com/Business/wireStory/fda-tells-23andme-halt-sales-genetic-test-21004582

http://www.bloomberg.com/news/2013-11-25/fda-tells-google-backed-23andme-to-halt-dna-test-service.html

Riyanka Ganguly – A young role model for all ages

I was blown away by this 5 minute speech by high school student Riyanka Ganguly. In an Ignite Seattle speech entitled ‘I Like Pink But That Does Not Mean I Can’t Think,’ Riyanka beautifully challenges stereotypes and preconceived notions that young girls (and grown women) encounter as barriers to their success–especially those of us interested in science. Riyanka is an unapologetic go-getter. She started a chapter of Young Women in Bio at her high school and I can’t wait to see all the places she’ll go!

Cate Edwards on supporting the fight against breast cancer–more than just donating money

Here’s a beautifully written piece by Cate Edwards on the different kinds of support breast cancer patients, families and friends need when facing this horrible disease. She chronicles the struggle her own mother, Elizabeth Edwards, faced before succumbing to the disease.

http://www.cnn.com/2013/10/08/opinion/edwards-breast-cancer/index.html?hpt=hp_c4

23-not-for-me: My thoughts on direct-to-consumer genetic testing

As a geneticist, I’ve been studying the genomes and genetics of other individuals (and species) for years now. From time to time, I have been curious about learning about my own genome. What’s hidden in the base pairs of my DNA sequence and what does it say about me? Do I really want to know? What would I do with that information if I had it?

Now, anyone who’s willing to fork out $99* can get their genetic information easily through companies like 23andme. If you haven’t heard of 23andme yet, you will as they’re now advertising on television. It works like this: you spit in a tube and a month or so later, you find out if you carry genetic variants in your DNA that may be associated with increased risk for certain diseases, may affect your response to certain drugs or a number of other traits. You also find out information about your ancestry.

Just to be clear, you don’t find out the sequence of your entire 3 billion base-pair genome. You get sequence information for about 1 million sites that are known to vary among individuals (called Single Nucleotide Polymorphisms or SNPs, pronounced ‘snips’) and have been studied for association with various phenotypes (things we can detect in people, like physical traits or health conditions, that are a result of genetics or genotypes).

That sounds like a lot of data. And I love data!

So, am I going to spit in a tube and wait for my own genetic data?

I don’t think so! At least, not yet.

The major reason is that we have limited information to really understand the impact of different variants. Yes, we’ve been able to identify a lot of variation among humans and, yes, we’ve even done studies that link certain variants with an elevated risk for common health problems like diabetes and heart disease. But most of these studies show weak associations with modestly elevated risk of disease.

With a few exceptions, there is very little actionable information that one can learn beyond current recommendations for a healthy lifestyle. What would the recommendation be for someone who carries a variant that’s associated with elevated risk for diabetes or heart disease? The answer: healthy diet and exercise. What’s the recommendation for the general population to reduce risk of diabetes and heart disease ? The answer: healthy diet and exercise. And what if you find out that you’re not at risk for heart disease or diabetes based on the variants that were tested, does that mean you won’t get heart disease or diabetes? No, not necessarily! So how much does knowing you have these low impact variants actually help?

Let’s talk about data again. It is a lot of data. But is it enough? If the genetic testing tells you that you don’t have the variants that put you at risk for breast cancer, are you really safe? Having worked in this field, I know that there are literally thousands of mutations across tens of genes (that we know of so far) that can put you at risk for breast cancer. A negative result from a few variants tested in such tests may give someone with family history of breast cancer a false impression that they are ‘safe’ from the disease.

A big concern is that, for some folks, this kind of testing (direct-to-consumer) may take the place of traditional genetic testing which is done under the guidance of a physician and a genetic counselor, who can better interpret and explain risk of disease. Based on your family history, your physician and genetic counselor can determine if you need to get genetic testing done for disorders known to have strong genetic basis (like predisposition to breast cancer or Huntington’s disease). I would argue that knowing and informing your physician of your family history is paramount.

So what about you? Should you send away spit for your genetic information?

Sure, if you want. But, I would think of it mostly as entertainment only (for now). It could be fun to find out about your ancestral genetic background. My own family history can be traced back for a few hundred years but I might be curious to see who my ancestors were further back in time. And, one may argue that gathering genetic data from a large number of individuals may actually help us better understand impact of genetic variants. But as far as I know, there’s no medical history or medical tracking that’s associated with your genetic information, which would be needed those kinds of studies.

Bottom line, if you decide to fork out a hundred bucks, just be informed about how much weight to put in the information you get. I wouldn’t base any major health decisions based only on these sorts of tests. Personally, I would wait until there’s more information available that will help us better understand the impact of genetic variants that contribute modestly to disease states. And if you suspect you may carry a disease-causing mutation based on family history–talk to your doctor!

*Actual cost can vary depending on how long you want access to the data. The cost of the kit and testing is $99.

Scientist, Communicator, Innovator

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